I am breaking a self-imposed rule today by addressing ME/CFS in the first person. It is not a subject I like talking about, except in the abstract: What research is being done? What treatments are effective? What can we do to pressure the government into taking ME/CFS more seriously? Why must we have so many acronyms?

Those questions are relatively easy to address. "How has ME affected me?" is another matter entirely.

Looking back on my long acquaintance with chronic illness (four of them as of this writing, but who's counting?) I have discovered that these illnesses have changed me - in some respects for the better. No, I am not one of those "glass-is-half-full" people (the glass, by the way, is entirely full; it is half full of water and half full of air). Nor do I experience "gratitude" on a daily basis. It's more a matter of perspective.This is what I have learned:

1) Most things can be put off. The world seems to run on crises that are to a large extent manufactured. Most things can be delayed - or not done at all. Laundry, for example. And, apparently, my car inspection.

2) The world not only turns without you, it travels in the same ruts. When I got sick there was a war. Two years later, when I sat up and resumed reading the news, there was the same war. It was in a different location, but the basic features were the same: Bombs. Death. Incomprehensible politics.

3) Lots of things aren't important - especially things you might have been doing for the wrong reasons. When I contracted ME I was finishing my PhD. At the time, I thought it was important, and the reasons I had for wanting a career in academia seemed to make sense: "Long vacations," "Academic departments are hiring women," "All the other kids on the block have one." The reasons that weren't on my list were: "I like academia," "I like talking with academics," "I am committed to my field of study." It turns out I really don't like close contact with people who think they are saying something meaningful when they are just blathering.

4) People say stupid things all the time, and it doesn't matter. When I first became severely ill, a friend said, "Are you working out?" I confess that at the time I wanted to kill him. (That was a job later performed by excess amounts of alcohol.) And when my daughter contracted ME, another friend said she was just "imitating" me to "get attention." Were those awful things to say? Yes. But people routinely say awful, stupid things, and most of the time they aren't even aware of how awful and stupid they are. That's because they are awfully stupid. You can't fix stupid. But you can ignore it.

5) Doctors don't know jack about the human body, and I don't need to tell them that. At first I wanted help from doctors. Then I realized they didn't know more about what was going on inside me than I did. What was more, they didn't seem to care. So, I began telling them they were full of crap. As the years wore on, I gradually became aware that I was not going to educate doctors - they are, as a profession, unteachable. I now know that GPs are nothing more than glorified drug dealers. So, I only go to one when I need a fix. If I need more than that, I'll go to a vet. (When your patients can't talk, you really have to listen.)

6) Illness doesn't happen for a reason. There is no grand plan, and God gives you plenty you can't handle. (I don't believe in God, but aside from that there is an obvious flaw in that statement: suicide.) There is no path, and we are not on a "journey." I didn't like metaphors when I was studying them, and I like them even less now. If you want to make a comparison, give me a good honest simile.

7) I breathe therefore I am. There is nothing that anybody can do to me that is worse than what I have already experienced. No matter how much weird stuff goes on inside my body, and no matter how many doctors dismiss me, no matter how many government agencies refuse to do a damn thing to stem the tide of what is surely an epidemic, no matter how many friends abandon me, no matter how many jobs I have lost, and no matter how many years I have spent lying in bed wishing it were over, I am still here. True courage is simply this: We are alive. And as long as we are alive, we must persevere.

First published on ProHealth as "You Are Not Alone."One of the harshest punishments that CFS/ME inflicts upon its sufferers is isolation. Human beings are social animals, and we do poorly when placed in situations that remove us from contact with other people.Isolation is not the same as loneliness. Loneliness is an emotional state, the result of feeling alone, even when other people are present. Isolation is a state of being prevented from interacting with other people. The distinction between the two terms may appear to be a fine point, but the crucial difference is that isolation is usually imposed upon us. Of course, there are those who voluntarily remove themselves from society, but these people – recluses – usually are content with their state of separation from the world. Why? Because they have chosen it. When people don’t choose to be isolated, when it is forced upon them by circumstances beyond their control, it is unbearable. This is why solitary confinement is the ultimate punishment for inmates in prisons. It puts people in a state of complete helplessness.The Center for Constitutional Rights considers solitary confinement to be a form of torture – a violation of the Eighth Amendment’s prohibition of “cruel and unusual punishment.” Prisoners who are placed in solitary confinement, even for a few weeks, experience “increased anxiety, nervousness, headaches, nightmares, fatigue, obsessive ruminations, confused thought processes, mood swings, depression, memory lapses, confusion, problems with impulse control, paranoia, feelings of overall deterioration, and thoughts of suicide.” These prisoners, by and large, were healthy before being placed in solitary confinement. Imagine how this type of isolation would affect a population that is ill.People with CFS/ME don’t have to imagine the consequences of solitary confinement on an ill population. Those who are severely ill experience the torture of solitary confinement on a daily basis. The four walls of a bedroom, for months, years on end, can feel exactly like a prison cell. In effect, it is no different from a prison. Whether your jailer is the judicial system, or the unpredictability of an illness, the result is the same.Much like prisoners in a penitentiary, people with CFS/ME feel themselves to be stigmatized, rejected by society, ignored, dismissed, unable to fit in. Even among those who can get out and about, CFS/ME is profoundly isolating. The illness is their “dirty little secret,” something they can’t talk about for fear of being labeled as “defective.” When they do dare to bring up the topic, they inevitably become objects of misplaced advice (“You should work out!”), psychologizing (“Were you abused as a child?”), false sympathy (“I’m tired, too…”), and all the other well-intentioned but ultimately distressing comments that anyone with CFS/ME dreads having to respond to. If you combine this social minefield with the physical limitations imposed by CFS/ME, and then add the very real fear that the illness will result in the loss of a job, or a spouse, or friends, the isolation becomes complete, for now it exists not just in daily life, but projects itself into the foreseeable future ... for all time.Breaking the Chains of IsolationAccording to Dan Moricoli, founder of the ME-CFS Knowledge Center, there are 24 million with CFS/ME worldwide. Other estimates place that number at a more conservative 17 million, but any way you look at it that’s a lot of people. It’s also cold comfort. Simply knowing that a lot of other people have this illness can’t help you break out of solitary confinement - or can it?The fact that so many people are experiencing – right this very moment – exactly what you are going through is not a comfort unless you also realize that they, like you, are seeking break the bonds of isolation. They are tapping a code on the walls of their cells, hoping someone will answer. Tap back and you may find that with the right co-conspirators, you will be able to tunnel your way out of jail.These are some of the ways people with CFS/ME have connected with one another.Support groups: Back in the day when dinosaurs roamed the earth, support groups used to meet in person. There still are support groups that have regular face-to-face meetings. But there are also a slew of groups that meet online. How do you find one? You can simply type in the words “facebook” and “chronic fatigue” into a google search. Many support groups not only have Facebook pages, but websites. State and national CFS/ME organizations also keep lists. Find these organizations HERE.Buddies: Having a buddy to talk can be a real lifesaver. A CFS/ME buddy is someone who is also ill, and who you can compare symptoms with (“I have this strange prickling feeling in my feet. Have you ever had that?”), who you can talk about treatments with (“Have you tried D-Ribose?”), who you can commiserate with (I’m having a bad day), or celebrate with (“I’m having a good day!”), and someone with whom you can simply feel as if you don’t have to keep up appearances. Just one person who really gets it can make a huge difference. (And that person could be you!) You can often find a buddy through a support group or meet-up. But sometimes they just appear, like ports in a storm. Once you start looking for friendship, it comes knocking.Forums: There are several excellent, longstanding forums where people come to exchange ideas, talk about the latest news, chat, and generally feel welcomed into a community: ProHealth, Phoenix Rising, Hawkes’ Health Forum, Not Crazy, ME-CFS Community, and ME/CFS Forums are among the best. Forums are great because they are organized into topics, which allows you to focus on whatever area interests you.Yahoo Groups: It is surprising how many yahoo groups there are for people with ME/CFS. If you do a google search on “Yahoo Groups” then, once you are in the directory, type in “chronic fatigue” or “Myalgic Encephalomyelitis” in the “Find a Yahoo Group” bar, dozens of groups will pop up. Many of these groups are local, that is they are meant for people who live in a specific city or region. Yahoo groups are not just a good way to connect with people, they keep you informed about the latest news in the CFS/ME community. Meet-ups: Meet-ups are local social groups that share a common interest. Like old-fashioned support groups, meet-ups get together in person. There are 115 CFS/ME meet-ups in 8 countries.Blogs: ME/CFS Blogroll is a list of over 300 CFS/ME blogs started by Elisa, a longtime ME/CFS advocate. In her words, “It helps with the isolation - to "hear" all our voices and views and it gives me hope to find help... and to feel better, some day!” I couldn’t agree more. It is very liberating to read a blog post that expresses precisely how you feel. What’s more, you can always leave a comment, or start a blog yourself. Expression is a safety valve for the frustrations of “down time.”Helplines: Many CFS/ME organizations provide helplines. These are usually staffed by volunteers and are meant to help people with CFS/ME find support groups, local physicians who may be receptive to patients with CFS/ME, legal help for obtaining disability, and other sorts of assistance. Although much of this information can be found online, it is nice to talk to a person who is helpful and sympathetic.

Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied for!

Here are five tough choices we continually face. There aren’t easy answers to the issues they raise: that’s why they’re tough choices.

1. Do we talk openly about our health problems or do we keep them private?This is an ongoing tough choice we face whenever we communicate with friends and family, whether it be in person, by phone, by email or even text. If we talk about our health problems, some of them may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former self or, even worse, as dependent children.

On the other hand, if we keep quiet about our health issues—perhaps even acting “fake healthy” as I’ve been known to do— we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

2. Do we ignore a new symptom or have it checked out by a doctor?On the one hand, it’s not good for us emotionally to be overly focused on every little ache and pain in our body. In addition, we may be concerned that if we raise a new symptom, our doctor will think we’re being oversensitive or even a hypochondriac—either of which could affect the quality of care we receive.

But consider this. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves. It isn’t easy, that’s for sure.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, utterly exhausting myself, combing the Internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. Anyone. Treatments-for-sale can be packaged to sound very seductive. People spend thousands of dollars on false cures. I know because I've done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These tough choices—what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking—also make up a major part of the workload for those of us with chronic health problems.

4. Do we push our body to the limit or do we always play it safe?Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

5. Should we aggressively fight to regain our health or should we accept our fate?Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. And, working to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health is…you guessed it—exhausting.

I see that I’ve used the word “exhausting” five times in this piece (not counting its presence in this very sentence!). It’s no surprise that mental and physical exhaustion are the consequences of having to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.